I’m new to the forum and trying to figure out whether I might have MAV. My doctor seems stumped and after my last visit she suggested I pursue some kind of alternative therapy because she had no answer for me.
Starting in January 2011, I began having a really abnormal feeling whenever I would move my head as well as nystagmus. I had the normal battery of vestibular testing as well as an MRI. The MRI was normal. My hearing was fine, but the testing showed I had some minor damage to my right inner ear. The ENT said I probably had VN. I pursued VRT and my nystagmus eventually disapated. The weird head feeling, however, persists and it’s now been well over a year. My pattern has been to have periods of improvement followed by periods where I’d get worse again.
I find my head feeling very difficult to describe. It’s definitely not a head “ache.” Sometimes it’s like my head is too heavy or like I have a constant pressure in certain places. Sometimes it feels like there is a force field around my head pulling it one way or the other. The more I move my head the worse it feels. Meetings at work are very difficult - looking at one person and then another - each time moving my head. The same when I have dinner with multiple people at the table or give a presentation and turn from the audience to my powerpoint presentation repeatedly over the course of a couple hours. I’m able to get through the activities that make it worse, but then when I’m done I feel awful - like there’s a tractor beam trying to turn my head against my will. The other day I was exercising and doing some head movements that I don’t typically do in the course of normal life and I induced a state where I almost felt like I might faint or something. Very scary.
My ENT said I would be better by now if the only thing going on was VN. So, now I’m left wondering what to do next. I have a neurologist who I saw at the very start of this whole process. I plan to go back to her to see if she knows anything about MAV. I also started keeping a diary of my symptoms to see if that brings to light any triggers that may be escaping me and I’m going to try the MAV diet as well. For one week last fall, I took a low dose of Valium when I had to attend a week long conference and that made me feel completely normal! Unfortunately, it stopped working for me after a week.
I know this forum is no substitute for a doctor, but does it sound like I might have MAV to you all? I’ve never had any symptoms of a traditional migraine. Thanks so much for your input. This whole thing has been and continues to be a real struggle. I just want to know how best to proceed towards finding a solution so I can feel normal again.
I am new here, but the heavy headedness and the tractor beam analogy sound quite familiar to me.
Do you ever find yourself holding your chin up with your hand, or something similar, to overcome this feeling?
I do that at work sometimes.
So it’s quite possible that I have what you have, and this forum sure seems to have people like us.
John
PS: would you mind reporting your minor damage? I could only do “cold” caloric, mine was 13 on the left, 8 on the right, but somehow that was a 29% difference. All of my other eyeball testing, other than caloric testing, was normal.
I have had some similar symptoms including the pressure and force-field feeling around the head… I too was told by the ENT all the different inner ear conditions that I could possibly have but after 3 months, it was clear that wasnt the case.
How much testing have you had done?
Are your symptoms getting progressively worse?
Where do you live and can you get a referral to a Neuro-otologist in your area? This is the specialist you would need to see.
It could be migraine for sure. Statistically it’s very likely in fact and as you’ve had clear MRIs that rules out several things. It may of course not be migraine but given that you’re still feeling heavy and foggy headed one year on what it most likely ISN’T is VN. VN doesn’t last that long. Muppo’s on the money - get thee to a neurotologist, or a neurologist who understands migraine.
Do you ever find yourself holding your chin up with your hand, or something similar, to overcome this feeling? I do that at work sometimes.
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Yes!! I do that all the time! I’m pretty much in a constant state of propping my head up in one way or another - holding my chin up with my hand, pushing the back of my head with my hand … I now always prefer to sit in a chair that permits me to rest my head against the back so I don’t feel like my head is teetering around out their unsupported. If I can support my head I pretty much feel normal.
Unfortunately, I don’t have the results of my caloric testing. I really should have all the specifics in hand. I had most of the tests done twice. The first round of testing didn’t detect any abnormalities. I then went to another doctor that had more sophisticated equipment - instead of hot/cold air in my ear, they used hot/cold water, they also had the rotational chair, and did a bunch of other tests. Bottom line, on my most recent visit the ENT referred to my damage as minor. Once I have my test results in hand I’ll let you know what they are so you can compare.
Anyway, glad to know I’m not alone in the world when it comes to constant head propping!
Where do you live and can you get a referral to a Neuro-otologist in your area? This is the specialist you would need to see.
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I think I’ve had the full battery of tests - hearing, flashing lights, rotational chair, water in the ears, air in the ears, sending sound into my ear to detect abnormalities in the echo, etc. - wish I knew the actual names of these tests. It took about two hours each time I had them done and the bill for the second round was about $5,000!
My symptoms don’t seem to have gotten worse. I would say overall I’ve improved versus where I was last year. I guess that’s why I just thought it was taking me longer to compensate from the VN and that I just needed to wait things out. I will definitely see if I can get an appointment with a Neurotologist. Thanks to all who made that suggestion. I had no idea what kind of doctor to turn to next.
If you look at these women: labyrinthitis.org.uk/
It seems possible to me that you have uncompensated vestibular damage as opposed to MAV.
But who knows? Regardless, I just want to put that on the radar.
As for me, not sure which of those 2 conditions I have. Possibly both.
Secondly, since you and I both have “head” issues, I am currently trying to build up my neck strength and flexibility…VERY slowly. If I turn my head back and forth several times quickly, my neck will feel weak for 4 days afterwards. So I’m trying my own brand of VRT where I make very slow controlled head movements, trying to improve the neck muscles as well as my balance, VOR, etc. We’ll see.